[il-talk] With articles such as this, it's no wonder people fear and dred blindness.

[Francisco Chang]

I agree with Kelly. I also want to add my views on living with diabetes. 

Francisco Chang, RN, BSN, AACC, CCRN, CVRN, sent from my iPad

On Jul 31, 2012, at 5:24 PM, Jenny Keller <jlperdue3 at gmail.com> wrote:

> OK, 
> 
> I usually don't post much on this list.  but have something to say now, and please pardon me if it comes across offensive, cause that's not what it's meant to do.
> 
> My husband is a type one diabetic.  As a child, he tried to manage it as best that could be done in the 70's and early 80's.  
> 
> When his parent's insurance ran out, so did his ability to afford testing supplies and sometimes, insulin.  He always tried to have insulin on hand, but he just couldn't afford all that was required for him to test his sugar.  
> 
> He worked and made too much for Medicaid to help him, so he was on his own.  He worked jobs that paid minimum wage and when you're trying to afford the staples of life, a roof over your head, food, electricity, etc, insulin was all that he could afford to control his brittle diabetes.  
> 
> In the 90's his kidneys could not hold out and eventually his eyes went too.  Because of rejection of a kidney and pancreas transplant, he went back on dialysis for four years and got another kidney, which thank GOD is still going strong.
> 
> The attitude that people with diabetes can always prevent blindness or complications such as kidney failure and the like is offensive to me.  
> 
> I know many diabetics that because of lack of insurance and the types of jobs that don't provide it, and lack of money, prevented them from taking care of their needs.  
> 
> the insinuation or even the judgement that it is their fault that they didn't take care of their situation so that's why they went blind is something that unless we are in their shoes we have no right to make.  
> 
> I have watched a dear friend die because of rejection of a transplant and now I am married to a man who would walk through fire for me, and I know, for an absolute fact, that had he been able to afford testing supplies to control his diabetes, he would've. 
> 
> You have no idea what it is like to watch this kind and gentle man stab his fingers over and over and over again to get just enough blood to get a test result, and to watch him perform household tasks with those same fingers that ache from those constant pricks from a needle to at times, never get the opportunity to even test because blood won't come due to cal-laces from doing it all his life.
> 
> Until you live the life of these people, and walk in their shoes, you have no right to judge whether they could've prevented their blindness, or kidney failure.
> 
> I'm sorry if this sounds offensive to you and if it does, there's nothing I can do about it.  But I live it every day with him, and know that he didn't neglect his diabetes, and he sure didn't ask for all the crap that he's gone through because of it.
> 
> Walk a mile in someone else's shoes before you cast judgement.  As it's been said "Let those without sin cast the first stone,"
> 
> Jennifer L. Keller 
> On Jul 29, 2012, at 9:07 PM, Kelly Pierce wrote:
> 
>> Bill,
>> 
>> Realize that blindness from diabetes is completely avoidable and type
>> II diabetes is largely or fully reversible.  He likely didn't put much
>> energy or focus on obtaining good health and he is likely similarly
>> motivated at being an independent blind person.  As Federation leaders
>> speak of endlessly, attitude about blindness and disability is the key
>> factor for independence. If he isn't putting out much energy into
>> living well, then the benefits of quality anything will be limited.
>> 
>> Kelly
>> 
>> 
>> 
>> On 7/29/12, Bill Reif <billreif at ameritech.net> wrote:
>>> Today's Chicago Tribune's news section actually has three articles about
>>> blindness. While two of them are factual and harmless enough, the below
>>> combines all the worst stereotypes imaginable. It makes those who lose sight
>>> late in life seem fragile emotional wrecks, the process of mobility a
>>> tortuous ordeal, and the effectiveness of programs to help us only marginal.
>>> The article includes one interesting admission -- that most people who
>>> complete the training program must return immediately before independence is
>>> possible. My heart goes out to this man, who must be embarrassed by such a
>>> description of him. I hope he yet discovers that so much more is possible
>>> than to spend the rest of his life warning people of the danger of becoming
>>> who he believes he is now. Meanwhile, Barbara Brotman and the Tribune would
>>> do the blind a tremendous service if she would more accurately describe the
>>> possibility of a decent way forward, as made more likely through
>>> participation in a training program with higher expectations -- one that
>>> does more in several months than teach someone how to pour coffee and
>>> complete a two-block rehearsed walk.
>>> 
>>> Bill
>>> 
>>> 
>>> 
>>> 
>>> 
>>> -------- Original Message --------
>>> Subject:
>>> Article from Chicago Tribune News 2012 07 29
>>> Date:
>>> Sun, 29 Jul 2012 19:24:06 -0400 (EDT)
>>> From:
>>> NFB-NEWSLINE Online <nfbnewsline at nfb.org>
>>> To:
>>> William B. Reif <billreif at ameritech.net>
>>> 
>>> 
>>> Learning to live once again after late-in-life blindness. Barbara Brotman,
>>> Tribune reporter. Jim Juchcinski stopped at the front desk. . You heading
>>> out, Mr. Juchcinski? the security guard asked. Outside, where there were no
>>> walls to hold on to? Where there were cracked sidewalks, cars swerving into
>>> parking lots, harried pedestrians rushing by? Outside, with no arm to grasp,
>>> no teacher's voice to follow, alone on a walk for the first time in two
>>> years? Yes," he said. I'm going to take a stroll. Close your eyes. Now take
>>> a step forward. How far can you get before fear and disorientation grind you
>>> to a halt? Ten steps? Fifteen, before you open your eyes? Juchcinski doesn't
>>> have that option. The Oak Lawn man is among 29,000 adults in Illinois who
>>> are completely blind, and must walk -- and cook, read, work and go about
>>> life -- in the dark. It is a learned process. And if you have seen someone
>>> with a long white cane walking alongside a sighted person, you may have
>>> spotted a lesson in progress. Juchcinski never thought about blindness. If
>>> he had, he might not have ignored his diabetes for more than 20 years.
>>> Instead, the disease raged out of control, and diabetic retinopathy began
>>> stalking his vision. Blood vessels in his eyes hemorrhaged faster than
>>> surgeries could stem the damage. On May 25, 2010, Juchcinski awoke from
>>> surgery to darkness. He never saw again. Juchcinski, 60, had worked for 35
>>> years as a pipe insulator. He worked under contract at all of Commonwealth
>>> Edison's nuclear power plants and several fossil power plants, often as
>>> general foreman or superintendent. Now he needed his wife to pour his
>>> coffee. His mood darkened; his world shrank. He went out rarely, and then
>>> only on the arm of his wife, Kathy. At least every other day, I started my
>>> day with a cry," he said. Which gave him a lot in common with those who come
>>> to the Illinois Center for Rehabilitation and Education, known as ICRE-Wood,
>>> to learn how to manage life without sight. Everyone cries when they lose
>>> their sight, Derrick Phillips, the center's superintendent, told students at
>>> the first meeting of the session Juchcinski would join. Phillips is blind,
>>> and he had cried too, he told them. But one day at ICRE-Wood, a couple of
>>> other students led him out of the building and down the street -- three
>>> blind men, walking on their own to a convenience store. Phillips cried again
>>> -- only this time, because he saw the possibilities. ICRE-Wood is the only
>>> state-run vocational training program for blind adults in Illinois. People
>>> come from across the state, some staying in its dormitory rooms, for its
>>> 13-week intensive program in computer skills, Braille, cooking, cleaning and
>>> mobility -- how to travel independently using a cane. It is a kind of boot
>>> camp for the blind. We deal with people in crisis, people who just lost
>>> their sight," Phillips said. They don't come right away. It often takes
>>> months or even years for people to acknowledge that they are visually
>>> impaired enough to need help, or to learn that there is help available at
>>> ICRE-Wood or agencies like the Chicago Lighthouse or Second Sense (formerly
>>> the Guild for the Blind). Two years after he lost his sight, Juchcinski sat
>>> in the office of Mae Michels, his orientation and mobility teacher, his
>>> solid frame squeezed into a chair. His T-shirt, which he had had made,
>>> hinted at the joker behind the dark glasses: "Blind Man Walking," it read.
>>> Michels, a diminutive and sprightly 22-year veteran of teaching mobility to
>>> the blind, listened as Juchcinski told her his goal. I want to walk down the
>>> street," he said. I want to walk my dog. He wasn't sure how he was going to
>>> do it. Just walking around his Oak Lawn condo, he bumped into walls so many
>>> times that he knocked down some of the framed art. He joked with Kathy that
>>> she didn't have to worry about him dying of diabetes; he was going to die of
>>> a head injury. But Michels nodded. She would teach him to walk down the
>>> street. She would take him step by step, starting with walks down the
>>> hallways at ICRE-Wood. The crucial tool would be his cane, which he had been
>>> given but never really taught how to use. You really need to listen to the
>>> cane," she told him. The cane acts as a hand, helping the user feel the
>>> difference between surfaces like tile floor, pavement and grass. It delivers
>>> audible clues, making a different sound when it hits a brick wall instead of
>>> a wood door. He would also learn to use his senses of hearing, smell and
>>> touch. And his memory: He would have to count doorways and remember how many
>>> he needed to pass before reaching, say, the washroom. Two weeks into the
>>> program, he stood at the front desk in the main lobby. His path to a walk
>>> outside began with learning how to find his way around the building.
>>> Hesitantly, under Michels' watchful eye, he walked along the edge of the
>>> desk toward the elevator, his cane finding the edge where the desk met the
>>> floor. Scrape, tap. Scrape, tap. Scrape, tap. He got stuck in the small
>>> cubby with the pay phone. He faced the wall for a few moments, tapping,
>>> before finding his way out. He navigated the long halls by memory, counting
>>> doorways to locate classrooms, and by senses. Every sound was a clue. The
>>> echo of Michels' voice outside the wide stairwell upstairs. The change in
>>> his own voice as he got closer to a wall. The pounding music from the gym.
>>> The cane's metallic echo against a baseboard radiator. Even the air held
>>> information. Sighted people might never notice, but in the space where one
>>> hallway intersects another, there is a slight breeze. Afterward, back in
>>> Michels' office, Juchcinski was drained. It's like going back to high
>>> school," he said. It's a lot to absorb. A few days later, he got lost in a
>>> storeroom. The door had been left open by mistake. For 25 minutes he tried
>>> to find his way out, bumping into desks and chairs, searching for the door.
>>> By the time a maintenance man came in and found him, he was sweating from
>>> nerves and fear. He was so angry he wanted to quit. But he didn't. Six weeks
>>> before the session's end, he ventured outside for the first time with
>>> Michels. She taught him how to make his way through the front entrance, with
>>> its two automatic doors that had to be activated by standing on a carpet
>>> square. He practiced repeatedly, at one point nearly losing his balance on
>>> the raised lip between the foyer and the sidewalk. Whoa, that sure wakes you
>>> up," he muttered. On Chicago's Wood Street, he took Michels' arm. She
>>> described the route as they walked it, in detail, down to the texture of the
>>> grass in the parkway. The week before his classes were to end, Juchcinski
>>> began a day in a funk. I was having a bad morning," he told Michels. I said,
>>> 'I'm frickin' tired of being blind.' " But the morning got better. With
>>> Michels at his side, Juchcinski walked the entire route that would be his
>>> solo -- this time, heading north on Wood Street. He gripped a new cane with
>>> an easy-rolling ball for a tip to "shoreline" the edge of the sidewalk,
>>> using it as his guide, as he walked to the parking lot up the block. A quick
>>> lesson in how to cross it -- listen for cars, check for the slant in the
>>> sidewalk down to the street -- and Juchcinski was ready to take his first
>>> solo walk. So ready, in fact, that he decided to add another first. Not only
>>> would he walk outside by himself, but he also would keep walking past the
>>> route he had practiced and go all the way to the intersection with Taylor
>>> Street. On a blazing hot morning in mid-July, the last day of his session,
>>> Juchcinski stood at ICRE-Wood's front desk, three months of training behind
>>> him and his first solo walk ahead of him. I'm ready to rock 'n' roll," he
>>> said. Happy trails," Michels said, smiling. Take your time," the security
>>> guard called out. I have no choice," Juchcinski said. He went out the door.
>>> Down the edge of the sidewalk. Down the ramp. North on Wood Street. Early
>>> morning commuters rushed past. The Pink Line rumbled. Sirens wailed. And
>>> then, halfway to the parking lot along ICRE-Wood's chain-link fence, tears
>>> slipped out from behind his dark glasses. He was crying with pride. He was
>>> walking by himself -- slowly, but with confidence. After sniffling a few
>>> times and murmuring, "I'll man up," he kept walking. But he had lost
>>> concentration. He veered to the other side of the walk. When his cane
>>> touched grass, he knew something was wrong. I think I went too far to the
>>> left," he murmured. He stepped into the grass and nearly lost his balance.
>>> He righted himself, crossed back over the sidewalk again and got to the
>>> rubber domes marking the parking lot entrance. He waited and listened. Then
>>> he started crossing the parking lot entrance. But he veered right, and
>>> walked into the lot. His cane touched a parked car. He turned around, but
>>> the cane got stuck in the wrought-iron fence. Michels tells students to ask
>>> bystanders for help if they need it. Juchcinski did and within a moment was
>>> out of the parking lot. It was time to cross uncharted territory. He stepped
>>> forward on the unfamiliar sidewalk. Methodically, he swept the cane from the
>>> center of the sidewalk to where it met dirt at its right edge. Step after
>>> step, he followed that shoreline until his cane reached something that felt
>>> different -- the raised domes marking the end of the sidewalk. He was at the
>>> corner of Wood and Taylor streets, and he was grinning. He kept grinning
>>> even after he collided with a fellow student while walking back. And after
>>> he stumbled into a tree and landscaping rocks next to the front door. In 29
>>> minutes, he had traveled 0.12 miles, and a long way toward independence.
>>> Like 80 percent of students, Juchcinski will go on to a second 13-week
>>> session at ICRE-Wood. He is learning more than mobility; he has been pouring
>>> his own coffee for months. After graduation, he has another goal: to become
>>> a motivational speaker for people with diabetes, offering his blindness as a
>>> powerful warning. He walked into the lobby, where Michels was waiting with a
>>> smile and congratulations. Students are required to check back in at the
>>> front desk. Juchcinski stood in front of the security guard. I'm just coming
>>> back," he said, "from a walk." ---------- blbbrotman at tribune.com
>>> chicagotribune.com/blindness See a video of Jim Juchcinski learning to
>>> become independent again. ct12 0011 120729 N S 0000000000 00005490.
>>> ILLUSTRATION: Photo(s) Graphic(s). Photo: Jim Juchcinski, 60, of Oak Lawn,
>>> with mobility instructor Mae Michels, steps toward independence outside a
>>> Chicago center. HEATHER CHARLES/TRIBUNE PHOTO Photo: Jim Juchcinski, who
>>> lost his sight in 2010 because of diabetic retinopathy, learns to walk
>>> independently again, guided by mobility teacher Mae Michels. HEATHER
>>> CHARLES/TRIBUNE PHOTOS Photo: With Michels' help, Juchcinski has learned to
>>> use his sense of touch and a cane to detect differences in surfaces -- such
>>> as tile floor, pavement and grass -- while walking. Graphic: Vision loss
>>> from diabetes Diabetic retinopathy is the leading cause of blindness in U.S.
>>> adults ages 20 to 74. The disease involves damage to the blood vessels of
>>> the retina. PREVALENCE AMONG DIABETICS In the U.S. Diabetics with
>>> retinopathy: 28.5% Retinopathy occurs more often in male diabetics Men:
>>> 31.6% Women: 25.7% 899,000 Americans with vision threatening diabetic
>>> retinopathy SOURCE: Centers for Disease Control and Prevention/TRIBUNE\ -
>>> See microfilm for complete graphic.
>>> 
>>> 
>> 
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